Totally new to this on-line stuff!!

[JB1]

Sorry for off-loading!!! Hi, I've been type 1 diabetic for 47 years, I'm now 49. Have lots of problems with split tendons in my foot and a torn up plantar fascia. Been told that the foot will never heal and when I.m in pain put the air cast boot on!! Foot is agony to walk on and obviously I'm a bit pee'd off about it. I actually didn't realise diabetes caused this sort of problem, am I the only one who didn't? I have a pump and HbA1c has been around 7.2 for at least the last 5 years, I have been told it's not that my diabetes hasn't been well controlled, but it's the amount of time I have had it. I also have suffered with Milner nerve compression and frozen shoulders in the past. Does anyone else have these sort of problems and how do you deal with it.

 

[Northerner]

Hi @JB1, welcome to the forum 🙂 Very sorry to hear about the problems you are experiencing I'm only 10 years in myself, but we do have quite a number of members with 30/40/50+ years of Type 1. Some are fortunate to have escaped complications, others not so 'lucky'. I haven't heard of the particular problems you describe, but have you been given any information about what other causes there may be besides (or in addition to) diabetes? I think simply having it for a long time can't be a direct cause, there must be other factors that have been at play. How long have you had these problems?

Hopefully, one of our members will be along soon and able to help.

 

[JB1]

Hi Northerner
Pain started Dec 2017, had MRI scan hadn't fallen or injured foot then or in the past. Had physio, shockwave therapy, been on and off of crutches since feb. Got air cast boot 6 weeks ago which is great as not in pain when wearing it. As soon as its off agony!!! I actually trust the diabetic consultant (he actually tells you as it is and hasnt been wrong so far) he explained that sugar settles on tendons they thicken especially over 47 years, which then causes them to split. Example is pulling rope through a hole thats too small, hence the splitting etc. Tendons and ligaments stay inflammed as you have to walk on feet!!! I know loads of doctors use diabetes as an excuse for everything, as even recently ive experienced this with my hand problem!!! They said it was neuropathy and nothing can be done but after going privately which i shouldnt have to!! It turns out to be impinged nerves in my neck and query carpel tunnel too!!! Just thought someone on here may be in a similar position to give some advice really

 

[Flower]

Hello @JB1 and welcome 🙂

I'm sorry to read about the ongoing problems you're facing. I have similar long term complications including serious foot and ankle problems - Charcot foot -that have left me in casts/air boots and reliant on crutches for the past 20+ years. Like you, I wasn't aware that the 'foot problems' I was told about could possibly mean the destruction of the bones in my feet and also my ankle joints. I've been told after numerous surgeries that my bones won't heal and my stark choice is to stay as I am in a cast ongoing and hope nothing else goes wrong or have a below knee amputation. I did seek a second opinion from the leading diabetic foot clinic in London who were so helpful to me and although there wasn't anything new they could suggest it made me feel better knowing I had asked. It may be worth your while considering asking for a second opinion about your foot , there may be some trial treatment or surgery out there and there is no harm in asking. You could also ask for a referral to an orthotist who may be able to make some custom shoes that protect your feet in the same way as an aircast boot does but are less cumbersome.

I've had surgical release for frozen shoulders which really helped with the pain and movement down my arms but met the same dismissive approach as yourself when I was referred about carpal tunnel and trigger fingers. The surgeon I saw asked me 'what did I expect when I'd had diabetes that long' and said there was no point in doing any surgery as it wouldn't improve anything. I went away and the nerve pain from my shoulders down my arms progressed and my thumb muscles started to waste away. I asked to see a different surgeon who operated on my hands the week after seeing me and the relief from pain was instant, I thank him so much for not dismissing me in the same manner as his colleague. My HbA1c has been between 5.8-6.5% for years now but the damage is there and however tight my control is, it doesn't stop new fractures and doesn't help me mend .

Do ask for a referral to a different orthopaedic surgeon about your hands as the pain from compressed nerves is agonising and can be dealt effectively by carpal tunnel release - if that is the cause . As for dealing with life ongoing in casts/airboot- it's really hard but I just accept that for me at present it is the better of my two options and I try to be philosophical about it. I use pain relief to enable me to walk and try my best to get on with what needs doing and keep the tightest control I can as although that hasn't stopped things progressing, I presume it must count for something in terms of preventing things getting a lot worse.

I wish you well and hope you can get some beneficial advice for your problems. Best Wishes 🙂

 

[JB1]

Thank you flower, you've had it rough too then!!! I'm not the only one that didn't expect this sort of problem then. I'm not the type not to speak up where doctors are concerned but do tend to get frustrated and annoyed when everything is blamed on DIABETES!!! I'm going to collect insoles in couple of weeks but I was going to ask about maybe something less cumbersome than the aircast boot!! Thank you for replying and best wishes to you too and hopefully, fingers crossed things stay stable for you

 

[HOBIE]

Welcome JB1. Sorry to hear about the problems you are having. Diabetes is a right ------ at times. Well done for your 47yrs. 😎

 

[trophywench]

I was 22 when diagnosed with T1 and ever since then whether it's Beri Beri or pneumonia it's always been blamed on diabetes however once I got to 50+ it changed slightly and since then it's been a combination of 'your age' and 'your diabetes'. You would think that doctors, especially GPs would welcome us with open arms as they get more money for us but they have no more time for us than anyone else. Most annual checks are now done by reasonably 'low qualified'/low experienced individuals, exactly the same as in hospitals.

The good thing about it is - you no longer have to feel the individual will make things difficult for you if you ask for a second opinion - they simply don't have time to waste bearing grudges these days!

 

[JB1]

Hello @JB1 and welcome 🙂

I'm sorry to read about the ongoing problems you're facing. I have similar long term complications including serious foot and ankle problems - Charcot foot -that have left me in casts/air boots and reliant on crutches for the past 20+ years. Like you, I wasn't aware that the 'foot problems' I was told about could possibly mean the destruction of the bones in my feet and also my ankle joints. I've been told after numerous surgeries that my bones won't heal and my stark choice is to stay as I am in a cast ongoing and hope nothing else goes wrong or have a below knee amputation. I did seek a second opinion from the leading diabetic foot clinic in London who were so helpful to me and although there wasn't anything new they could suggest it made me feel better knowing I had asked. It may be worth your while considering asking for a second opinion about your foot , there may be some trial treatment or surgery out there and there is no harm in asking. You could also ask for a referral to an orthotist who may be able to make some custom shoes that protect your feet in the same way as an aircast boot does but are less cumbersome.

I've had surgical release for frozen shoulders which really helped with the pain and movement down my arms but met the same dismissive approach as yourself when I was referred about carpal tunnel and trigger fingers. The surgeon I saw asked me 'what did I expect when I'd had diabetes that long' and said there was no point in doing any surgery as it wouldn't improve anything. I went away and the nerve pain from my shoulders down my arms progressed and my thumb muscles started to waste away. I asked to see a different surgeon who operated on my hands the week after seeing me and the relief from pain was instant, I thank him so much for not dismissing me in the same manner as his colleague. My HbA1c has been between 5.8-6.5% for years now but the damage is there and however tight my control is, it doesn't stop new fractures and doesn't help me mend .

Do ask for a referral to a different orthopaedic surgeon about your hands as the pain from compressed nerves is agonising and can be dealt effectively by carpal tunnel release - if that is the cause . As for dealing with life ongoing in casts/airboot- it's really hard but I just accept that for me at present it is the better of my two options and I try to be philosophical about it. I use pain relief to enable me to walk and try my best to get on with what needs doing and keep the tightest control I can as although that hasn't stopped things progressing, I presume it must count for something in terms of preventing things getting a lot worse.

I wish you well and hope you can get some beneficial advice for your problems. Best Wishes 🙂

Hi Flower
Can you tell me which London Hospital it was that has given you the best advice. I was told to go to Royal National orthopaedic Hospital but if I did would they understand the diabetes issues?